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Amyotrophic Lateral Sclerosis (ALS) Message Board


Amyotrophic Lateral Sclerosis (ALS) Board Index


Re: At my wits end!
Mar 30, 2012
Hello,

I know it has been a while since your post. Sorry to hear about your husband & hope he is doing well.

My brother was diagnosed with Sporadic ALS exactly five years ago. Once he got his diagnoses it wasn't a week before he had to leave his job. He was an eletrician and could no longer grip his tools. Within 6 months he was in a wheel chair and his speech was going fast. I can't answer insurance questions because my sister in law handled that end. I know she researched a lot on the internet and got all the help she could from the ALS Association. My Mom became his full time care giver and my sister in law continued to work until just a couple months ago. After five years of ups and down hospice declared he was now at the end stage of his ALS. It seemed every 6 months he would go down and then level out for another six months. I just came back a couple days ago from a visit. They live in Texas and me in California. He was shocking to see at first but I went in with a big smile on my face and enjoyed our visit. I got a few smiles, we watch a movie and I did the talking for the two of us. I showed him pictures on my facebook and phone. It was a good visit.

He is still fighting and hospice won't give us a timeline only that he is at the end stages. His youngest daughter is now a senoir in high school and graduates June 1st. We think he is holdiing on for that. He said he wanted to see both of his daughters graduate when he was first diagnosed.

I have learned a lot, seen a lot. If you want to chat let me know. I will try to help as much as I can.

He was 42 when diagnosed and is now 47. His name is Scott and he my adored big brother.

Best wishes
Denise

P.S. After his diagnosis my brother never stepped foot in a hospital or doctors office again. He takes no medications (he refuses) only his vitamins. Hospice starting coming a couple years ago but he only lets them come once a week to check his vitals. He refused a feeding tube. Just recently he asked for Morphine but he doesn't take it. He will not touch the Bi Pap but does do his breathing treatments.





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